Recent content by andrewf

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    John R. "Dick" Miller RIP

    Last night, my father-in-law, a US Army cold war veteran, breathed his last breath after a gallant effort managing his ALS. While "expected" it was not expected this fast. His mobility issues started creeping up in 2018, foot drop by 2020, and ultimate diagnosis in 2022 in June. He probably...
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    PALS passed away

    So sorry for your loss. I wish you peace and blessings. I am about to make the final post here soon, because my PALS died late last night. Very peacefully but it still seemed more sudden than I had thought.
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    Father in Law on a gradual downward slope

    My father in law, Army Cold War Vet from the 1960s Germany..... It started way, back, back in 2020 with gait issues (he'd walked slow for years) then in 2021 surgery on his foot, and then his ALS really became apparent. prior thread Proper diagnosis June of 2022, and now in August of '23 he is...
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    Bulbar symptoms, need opinions

    everything you described above is consistent with just what you say you have....health anxiety. ALS is a disease of 'failing' not 'feeling' Remember this anytime you are in doubt.
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    Gastro discomfort....

    His gastroenterologist just wrote back and is prescribing him sulcrafate plus a smooth muscle relaxer. Two suggestions I actually made to her in an email (y). Well, my own mom came up with the sulcrafate suggestion. His meals are pretty typical food, oatmeal and sandwiches and regular dinner...
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    Gastro discomfort....

    My father in law (FIL) has had ALS for 3 years, started very very slowing 2020, and was not diagnosed until 2022 in June. COVID, foot surgery, and other things intervening in the process. Walked until March of 2023 and finally said “done, can’t do it anymore.” He made a real effort to keep it...
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    CALS Roll Call Continued

    The thing about it is, there isnt ever any need for him to enter a "formal" hospice situation. He's kind of already in one...he goes to medical stuff he wants to and doesnt go things he doesn't. Between the VA's disability, R1, and R2 level payments to him, he has all the care he needs now...
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    CALS Roll Call Continued

    Thought I’d write here some, it helps me to get some thoughts out. Being an ancillary CALS, watching the decline and being active in helping with accommodations, the worst part is to see his attitude decline so. My Father-in-law being the PALS in this case; let me caveat it that my wife (as am...
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    reflection and rant

    poet1973 posted: I wanted to reply but could not since it was locked. But this sentiment is something I think about. My father in law is the PALS in my life, and I'm a part time CALS but he fortunately has a caretaker aid 12 hours daily. Hes almost 80. I'm 45. But every time I make a...
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    The movement that can make or break your spirit

    I completely understand my FIL doesn't any part of feeding tubes or breathing machines. And after reading all of this stuff I would not either. But I also understand why people would want to utilize such equipment.(y) I think if I did, I would leave a standing order that if I was sleeping...
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    The movement that can make or break your spirit

    my father in law has various issues like this. He has a caretaker from 8-8 daily during the day, who helps deal with things. VA care hours and funding has been a lot of help my mother in law is too old to do this stuff.
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    The movement that can make or break your spirit

    I'm convinced that all human civilization, everybody's aspirations and dreams and plans and ability to do anything with their lives, all our lives individually and collectively, its all predicated on the ability to use the bathroom ourself independently and at a place and time of our own...
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    Aides for overnight?

    My mother in law, for whom we provide a great deal of support with for my father in law (we live close, wife and I are only-children with 3 kids of our own).....she has caretakers from about 8am to 7:30 or 8 pm, daily. Thanks to the support of the VA, who provide about 40 hours and they use...
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    CALS Roll Call Continued

    The day finally came last week, my father in law no longer walks. Just said “I’m finished”. His walking has been getting gradually slower and worse over the last year. He’s almost 79. He doesn’t want to fall again and hurt himself. So he’s self aware and wise there. Now he has a sore on his...
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    Hospital bed in small room solution

    Thanks folks for the kind words. Part of what I find rewarding in my situation as a part time CALS is that I can apply my engineering and hands-on skills to not only solve technical problems for the patient(FIL), but also my mother in law, making things she does easier and less stressful. That...
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